Saturday, May 31, 2008

It's almost over

and I survived. Again. I'm starting to wonder just what it is I'm made of? Something pretty darn tough, whatever it is.

It (the anniversary) wasn't as horrible as I had thought it would be. Her birthday was a lot harder and that surprised me I guess. Nobody called us today and nobody remembered. (except you wonderful internet friends! I wish I could scoop you all up and have you here!) Unfortunately husband and I have come to expect this from our (un-supportive) family. But that topic deserves it's own post, really. I have some real anger issues with our family members as of late........

Husband said something in the car today that really struck me and totally helped me limp a little easier through this day. He said that in all actuality today was a good day for Isabella last year. We are the ones left suffering, but hers is truly over. He even quipped that in Heaven they probably celebrate the day they died, rather than their Earthly birth. I wonder if he's right....? Whatever the case, it sure gave me some peace of mind and really opened up a different view for me. I can get pretty caught up in my loss.

So today we celebrated her. We had a picnic at the cemetery, (sounds morbid, but it wasn't I promise) we brought new flowers for her vase (both real and artificial, pink of course) and a pinwheel from Turkey. I shocked myself and didn't cry. Or sob. I just had a sense of peace and being carried through today. It was a nice change of pace for sure. I really feel like Isabella was with me today.....I felt her holding my heart more than once almost whispering "I'm happy now Mama, don't cry for me, be happy that I'm free now." I know that is what she wants. I just struggle to get there on a daily basis.

I busied myself throughout the day with things around the house and hugged both my boys a thousand times and kissed them a million. I really love those stinkers and they deserve a present and clear mama. I'm working on it........... Again, I know in my heart is what Isabella would want for us.

I tried to not focus on her death today and the time that she died last May completely slipped by me, as I was lost in bathing, singing, hugging and kissing goodnight, my two sweet boys. I think today I made some real progress in my grief and it's ironic how it's been exactly one year. One whole year and I just might start to put my life back together.

It's as though, I can breathe again. A little anyways.

As the years pass, I know this will get easier. In a way that relieves me, but also makes my heart know that I will eventually not think of her in every moment. I will get caught up again in life and find joy once more and the sadness will lift. I know this is *good*, but it comes with a price. Just like everything in life, this is no exception.

To my sweet Isabella: Like your Daddy said today, you are rejoicing in your new life today. You are free of your body and all its suffering. You breathe freely, you laugh, you run. Everyday is a happy day for you, surrounded by love with Jesus and I am happy for you my darling. Although not a moment goes by where my heart does not ache for you, I am reminded that you are now so beautiful and at peace, in a way you could have never bee on Earth. I see you in your brothers everyday and my heart sings and cries at the same time. Please watch over your brothers, especially Turkey. He misses you so much and speaks of you daily. His heart is broken too and I know you can hold his like you hold mine. I cannot even imagine the beauty you possess in Heaven and I cannot wait to feel your tiny hand in mine once again and feel the warmth of your embrace. We may not be together as a family here on Earth, but I have no doubt that our day will come in Heaven and our family will be complete again. I love you and miss you terribly. Thank you for helping me today...........

Wednesday, May 28, 2008

Waiting it out

For the record, I have no idea why in my previous post, the last half is teeny-tiny print. I've tried to fix it a million different ways and I give up. YOU SUCK BLOGGER.

So, the anniversary. It's Saturday, did I mention that? Yeah, three days away. One year. One whole year without her. I cannot even wrap my mind around it really. Some days my life with almost seems like a beautiful, yet nightmarish dream. Other days it was if I just had her in my arms just yesterday. I was just crushing 8 different medications and feeding her all her thickened bottles of formula. It's been a long time though........a whole year, remember?

I thought I was going to make it through this week OK, I thought I was handling it well. I was wrong. I've started I don't know how many fights with Husband over stupid, asinine things. I've been a real snapping turtle with Turkey, and haven't been able to discern why I feel so plain awful. Oh yeah, my daughter died. That's it........

I find myself spacing out, getting dizzy for no reason, crying randomly and earnestly. Oh and lets not forget eating.......because that is my solution for dead-child-syndrome. FOOD. Man, I'm a psych doc's dream.

It probably doesn't help that we are in the midst of trying to find and buy a new house. Part of me is so excited for this, because hey, who doesn't like a new house? But of course, part of me is horribly, terribly sad, because this is the house where Isabella lived.................and died. What do I do with that? Of course, I can't stay here forever unfortunately. We were actually looking for a new house right after Isabella was born and then the seizures started and well, you know the end to that story.

I know she's not here in this house and it's not like if we move she'll stay or here or something crazy like that. It will just be very hard to sell this house to a new family and not ever come back. I don't even like thinking about it.

A year ago today Husband and I decided it was Isabella's time to go home. It wasn't an agonizing decision, it didn't take hours of screaming and crying like I had pictured in my mind so many times. I had spoken with her doctor over the phone early that morning while Husband, my mom and Isabella's hospice nurse sat by waiting. I'll never forget that conversation. I had just told him that the antibiotics had not changed anything for our girl and that she was in fact, three days later still running a very high temperature and no amount of motrin/tylenol would stop it. She had stopped sucking first and shortly thereafter stopped swallowing. We were at a loss. Why now? What changed in her brain? More importantly what do we *do*.

He said to me "Michelle, we can always put her in the hospital, put her on an IV antibiotic. That's an option. But, since she cannot suck or swallow any longer and her SATS are so low (oxygen) you know what will happen." He paused. I paused and then said "You mean, a feeding tube, a ventilator, etc, etc, etc." "Yes" he replied. He continued, "I know how you and Husband feel about that sort of stuff for Isabella, so I just want you to consider everything." I sat there for about 30 seconds and said simply, matter-of-factly, "It's time isn't it? We won't be taking her to the hospital." He just said "OK then, let me know what you need, when you need it."

That was that. I had just decided that I would not save my daughter's life. I would let her die.

It simply goes against the laws of nature to make a choice like that. And I guess I don't have to tell you it was not an easy choice. If I had been selfish and thought of only myself, I would have had her at the hospital in 10 minutes. But I knew in my heart what she wanted from us as a family, what she would ask for if she could have. I wanted to ignore what my heart was telling me, but I couldn't.

I will struggle with this choice for the rest of my life on Earth. Not in the sense that I regret it, or think I made the "wrong" choice. But just in the sense that now that I know what life is like without her, I wish I would have been more selfish and forced her to stay alive. I know that's awful, but I can't help but feel that way now. It was a lot easier to let her go when I didn't know how painful it would be living my life without her.

I have to remind myself of her suffering. I hate thinking about it, but I have to. Otherwise I get caught up in this fantasy of having a thriving daughter and completely forgetting what her life would have really been like had she not died. At this point she would be totally bedridden and I would not have the time to feed her 6 times a day and hold her all day. She would get all of her feeds through a tube. She would have been in and out of the hospital all winter, because every little cold Turkey got would have been full blown, life threatening pneumonia for her. I would have a busy 4 year old and a healthy 7 month old and a very disabled little girl. I would have finally had to cave and hire help and that would have killed me. When she was here I would hardly ever let anyone help me, she was MY daughter and she needed ME. I was very selfish with my time with her and I will never regret that.

I miss her and the thing that bothers me the most is wishing I could watch her grow up. Wondering if that was my only chance to have a girl and I came thisclose and it slipped away. My life on Earth seems so long and lonely now without her. Yes I love my two sweet boys and my Husband, but I will never have that piece of my heart back. Nothing can replace what is missing now.

I told Husband last night, while I was hysterically crying that all I want is "for Isabella to be here and to not have Lissencephaly." At some point I have to accept that it isn't going to happen. This isn't a really bad dream, this is my life.

I miss you sweet Isabella, more than you know thank goodness. I know everyday for now is ten times more beautiful than it could be on Earth. I know you are surrounded by warmth and love every minute of every day. We will be together again someday and God has promised to keep you little for me so I can raise you in Heaven when I get there. I cannot wait to see your first smile at me and hear you say my name. To watch you dance and run and hear your sweet laugh. I know I will have to wait a while, but it will be so worth it. I love you so much baby girl, I hope you know it. We are always thinking of you and talking about you, but I'm sure you know that. Turkey asks about you almost everyday still and always wants to hear stories about you. He still has some great memories of you that he'll always cherish I know. We know that wherever we go, you will follow. You will always be a part of our family........death can never change that. I love you , I love you, I love you.

Wednesday, May 21, 2008

Thank God I'm breastfeeding

Or I would be drunk as a skunk every.single.night right now. Just to numb this damn pain. I'm so tired of feeling so sad, so lost, so EMPTY. Oh and let's not leave out poor neglected ANGRY. Yeah, 'cause I'm that too. I'm a lot of things unfortunately and none of them are good at this time.

On the 31st it will have been one year. ONE YEAR WITHOUT MY DAUGHTER. One year without holding her, smelling her, kissing her, feeding her, medicating her, suctioning her, and loving her. Well, of course I still love her, but not in the same physical sense. You know what I mean. Or not.

You know I realized something recently and it broke my heart all over again. One night, I watched this movie ("P.S. I love you", and yes I cried my damn eyes out) and there is this part where the main character realizes that "he's gone, she can't feel him anymore" and I lost it. Because that's just it lately. I don't "sense" her or whatever anymore. For a long time after Isabella died I still felt her in this house and we had some pretty strange things occur that I believe were all Isabella. But lately something had changed and I just couldn't put my finger on it.....but there it was. She is really gone now. I fucking hate that.

I really lost it the night I realized that. I wandered the house just trying to "feel" her.....anywhere. I got nada, zip, zilch. Husband says "that's a good thing". I mean, I guess? Yeah, yeah, I want her in Heaven and to be happy and care-free, but what about me??? What am I supposed to do without her?

Be happy? Move ON?

I just can't do that it seems. Or at least I am really struggling with that. I feel this tremendous guilt at even thinking of "moving on" (which really, how does one do that after burying a child, I'm curious?) I'm probably a little scared as well. Scared to be happy, to feel unafraid again. What if something else happens? I mean, I'd like to think Isabella filled my "dead child" quota for this life, but somehow I don't think that's how it works. I've heard some pretty sad stuff.

I feel like I am not being a good mom these days. I snap, I yell, I curse, I ignore. Not all at once.........well usually not all at once. I hate acting like that, but I feel a little out of control I must admit and I don't know how to handle all this shit. I have these two beautiful boys right here in front of me and all I want to do is mourn the one that died. I just want to lay in bed and cry and yell and sleep. Oh, blessed sleep. But I don't get to do that. I can't decide if that is a good thing or not.

And then there is the actual D-Day. (That's death date to you mere mortals). How do we handle that? Do we lock ourselves inside away from the world and sob our eyes out? Do we celebrate her life? Are we even capable of that? What do we do????? Really, I'm open to suggestions here. I'm at a loss.....this is my first time and all.

So here I sit. Struggling in my battle once again. Maybe at some point things will be on a long least I hope so.

I'm off to bed to get some sleep or what I like to call "not sleep because I'm breast feeding my teething 6 month old all frackin' night long." Damn I'm tired!

Tuesday, May 13, 2008

I survived

Mothers Day that is. It started out pretty rough, but I got a grip and enjoyed the rest of the day. I decided it simply wasn't fair to sit around and mope (OK, sob my eyes out) when my two boys need me and want me so badly.

It's such a delicate balance, to have healthy children living on and a child that is gone. I can't really explain with words what it feels like have aching arms, when they are in fact full. It's surreal and part of my baggage I guess.

So, Mothers Day. Dear, sweet husband started my day off right with flowers (picked out by Turkey himself!) and belgian waffles with sausage. Mmmm Mmmm Mmmm. I ate said breakfast while lounging (yes, LOUNGING, egads!) in bed watching a total make-any-man-puke-full-on-chick-flick! It was bliss. True bliss. I then lounged MORE while Rollie Pollie napped and breastfed, napped and breastfed for TWO HOURS. Whoa. I know.

Then I got up. The end. Oh, just kidding. We went to the cemetery and it wasn't bad at all.......I'll talk more about that at a later time. I ate insane amounts of delicious and uber fattening foods and it was good. I had a wonderful day with my sweet family. I really do love my family, in spite of everything....I love them a lot.

Turkey told me about one thousand and fifty times that I was the "best mama ever!" and the "prettiest mama ever!" and "Happy Mothers Day Mama!". What a stinker.

Oh and the best Mothers Day gift of all? Rollie Pollie has said his first word............"Mama". I have waited since Turkey to hear another one of my children utter my name. I would have given a million dollars to hear Isabella's sweet voice say it. Alas, I will have to wait for that one. But Rollie Pollie is just as good :) We are surprised that he is "talking" so early, but he comes by it naturally! Now, whenever I leave the room I get "Mama! Mama! Mamamamamamama" (shortly followed by wails of despair because I've been gone long enough to pee.)

Oh baby!

OK, that's it. It's over. Big sigh. Big, long, sigh. On to the next dreaded date. We'll see.

Monday, May 5, 2008

Mothers Day is not my Favorite Day

Two years ago, we received the worst news imaginable three days before Mothers Day. That weekend was so foggy and emotional for me. I had just been handed this disorder and had no idea how to handle it. To say I was depressed would be putting it very mildly. My mom had come over and shoved me out the door with Turkey to spend some time with him and try to enjoy "My Day". Right.

So I robotically (is that a word?) took Turkey to the park to play (It was a beautiful day) and it was an awful experience. As I looked around at the busy park I couldn't help but notice all the joy...the sheer happiness everyone was exuding. Except for me. All these people and their shiny perfect lives, healthy kids, celebrating and rejoicing. Except for me. I spent the entire time crying behind my sunglasses and faking smiles and "hello's". I was beyond miserable. Trapped in a world I never imagined. My life had just been shattered and here I was at the freaking park.

I wanted to enjoy Turkey and take solace in the fact that I had him, but I wasn't ready for that yet. I wouldn't be ready for a while longer. I mean, seriously, it had been three days. Not even close to enough time to process things. I hated Mothers Day.

Last year was a little better. Isabella was on a huge up-swing and Husband had said I could lay like broccoli in bed all day and watch chick flicks. Around 10 am he brought Isabella in the room and said he was about to lay her down for her nap and I said "give her to me, let's see if she'll sleep with me in bed". This may not sound entirely unusual, but for Isabella it was. She hated to be "cuddled" most of the time and preferred laying all alone in a nice bed. I cuddled her up next to and you know what? She slept. Like an angel. Like a normal baby would. She cuddled with me for two whole hours just she and I. I stopped watching the movie and instead stared at her.....studied her.....took her in. Maybe my heart knew the end was soon? Who knows, but two weeks later I suddenly lost her and I was so grateful for that moment in time.

With Mothers Day quickly approaching I'm feeling very heavy and of course, sad. I have my two healthy, wonderful boys of course, but I would be lying to you if I said that was enough. I'm greedy like that I suppose. It's not enough. I want Isabella here's the only thing I want for Mothers Day. The impossible gift.

So for the rest of my life, Mothers Day will also be the same time of year as Isabella's death. Perfect. I will always have to fake a smile and pretend I'm OK for my living, healthy children, but below the surface, I will be crying, wishing my baby girl was here to celebrate this day with me. Like I said, I'm greedy.

Not all Mothers have everything they want on Mothers Day. Some of us are left aching, yearning for something more.

And yes, I am of course grateful for my two healthy boys. I am still blessed and all that. I just don't have everything I should. That's entitlement you smell and I make no apologies for it. I never will either.

I hope every mother who reads this has a wonderful day and I hope you have all of your children with you to hold and love.

Saturday, May 3, 2008

I knew the day would come

When I would hear a mother call her daughter's name, and it would be "Isabella". Last week Rollie Pollie had his 6 month check up (he's doing fabulous by the way) and I was standing at the counter filling out more paper work (yea!) because the office has a new computer system. So I'm standing there, minding my business and what do I hear? Three.little.words.

"Isabella come here please!"

A mammoth sized lump immediately lodges itself inside my throat and I look. I have to look. I don't want to look at this Isabella-girl, but I have to. To see. Does she look like MY Isabella? She was in fact, there for her 2 year check up. Perfect. Great. Wonderful. Praise Jesus, she didn't look a darn thing like my angel, I was at least spared that much. But still. A sweet, two year old Isabella running around, talking, smiling, laughing, playing, throwing a beautiful temper tantrum. I glimpse of what I could have. What I should have, but do not. Can not. Will not have. That sucks.

I somehow managed to pull myself together, and NOT cry hysterically at the front desk. I even managed to tell this other Isabella's mother where I got my sling when she asked......without a freak out. One down, a million to go I guess, right?

Well, I'm officially in the "death date month". Yipee. Much to my surprise it hasn't been as horrible as I had dreaded. The birthday was awful, awful, crappy, maybe this won't be as hard. I can only hope. Two months of emotional over-eating, crying, yelling, no sleeping, agonizing over every detail of her death can't be good for me? Right?

Yes, I agonize over her death. Incessantly. Unhealthily. Every detail. Every decision. Everything. Sometimes I just lay in bed and can't turn the horror movie in my mind off. I want to, but I can't. I can still see her..........dying in my arms. I can still hear the awful sound the last of her breath made when it was over. Over for her, but not for me. I can still hear my own screams and cries when she left me.

I will tell you the most difficult part of the night Isabella died. This is something that haunts me and I'm afraid it always will, because I have never had to do something so incredibly difficult in all of my life and I pray like hell that I will never have to do it again. After Isabella took her last breath, I held her....and so did Husband. Family and friends slowly left the room, our Pastor came by to say a prayer over our family and I held her. For as long as I could. I know we were lucky to have her pass in our home (if you can consider any part of my story "lucky" that is) and I am grateful for that small part. I was able to hold her as long as I a point anyways. I know she passed away around 8 pm that night......and the last time I saw her sweet face was sometime after 11 pm. Our hospice nurse, who had become one of my good friends, came in and told me whenever I was "ready" they would make "the call". "The Call" was to the funeral home. I sat in bed, holding my sweet girl, wrapped in my favorite pink blanket not wanting to ever make "The Call". When was I ever going to be ready? I mean, really? Not ever.

So I finally told her to make "The Call" and I waited. I cried. I waited. When he got there I was just beside myself. I was crying uncontrollably in front of who knows.......I didn't care. I vaguely remember someone saying "let it out Michelle, it's OK" and boy did I. I just couldn't believe I was sitting in my living room on a Thursday night holding my dead daughter. Just sitting there. It was beyond surreal.

I can't remember the man's name who came to get her, but I will always remember his compassion and the delicate way he handled us.......and Isabella. I didn't know what to expect, I had never done this whole child-died-in-my-house-what-comes-next-thing. He came in a black Suburban and asked us for Isabella's car seat. He wanted to take our precious girl in her carseat to the funeral home.

I can barely type this you should know.

I was so appreciative that he didn't want to just lay her in the back, because of course she was not just a dead body to us. She was still my Princess. None of it seemed real to me. The whole evening was like an out of body experience. Truly it was as though I was watching it, not living it. I couldn't be living this nightmare you see, not me. It just doesn't happen to people like me. Only others.

So I put my Princess, my Isabella in her car seat. I buckled her in just like I would have on any other day. I was hysterical of course and furious and devastated and a million other things. At point, and this is God's honest truth, I almost took her and got in my car. I don't know where I was going to take her, but I just couldn't let someone take her from me. I couldn't handle the idea of truly never touching her again. Never holding her again. It was over and I wasn't ready. Isabella was ready......she wanted to fly, to play, laugh. Letting go of her soul was so much easier than letting go of her body.

Husband and I held each other as we watched the man drive away with our baby. Our daughter. That moment is forever etched in my mind. Like I said, it haunts me and tortures me. For how long, who knows......

After that, family slowly trickled out and we were left alone. The silence was deafening. I stayed up very late that night putting a montage together of her life, our life, working so diligently to get it right. To make it perfect. Like her.

The next few days and months are all pretty blurry after that. At her funeral two days later I was an empty shell of person on shock mode. I smiled, I waved, I hugged....but I was empty. I was not there. I had checked out. I do remember coming home from the funeral and collapsing on the couch and crying uncontrollably until I fell asleep.

I miss her. I miss her so much it hurts......I ache to touch her, to hold her, to simply smell her. Just once.

What I would give of myself, my life to just see her happy and healthy. To watch her dance, smile, laugh or wave. To hear her call me "mama". Anything.

I will have to wait and try to understand God's plan for my life and for hers.............that sounds so simple, but let me tell you, it is not. Or easy. Or fun.

My sweet darling girl, I miss you every moment of this life. I will always think of you on bright, sunny, breezy days, the days you loved the most on this Earth. I hope everyday in Heaven is just like that for you. I cannot wait for our family to be together as one in Heaven and to be a Forever Family. I know you are watching over us everyday, I can feel it. I love you forever sweet Princess.